Trusting.

Kerissa • April 27, 2017

“It is a glorious thing to know that your Father God makes no mistakes in directing or permitting that which crosses the path of your life.  It is the glory of God to conceal a matter.  It is our glory to trust Him, no matter what.”

~Joni Eareckson Tada 

Hello friends,

I’m so sorry it’s been more than a month since I last blogged! To be honest, the last several weeks have been very rough….

Long story short, I had yet another ER visit/hospital stay at the beginning of April because of issues with my port, neurogenic bladder complications (I had to be cathed, and they couldn’t get “it” in on the first AND second try which was so extremely painful!!! The third try almost didn’t work either!), dehydration, terrible nausea/vomiting, weakness, and other horrible medical stuff.  This admission was only 3 days, but it was really hard because I felt so miserable and yucky.

Here are all the other numerous medical updates:

Gastroenterology–

Good news first!  I am maintaining my weight and not losing more, so increasing my tube feeds is enough and we don’t have to up my TPN calories.

2-3 weeks ago, I started experiencing some concerning GI symptoms, and my GI specialist now believes my lower esophageal sphincter (LES) is not closing well.  This is not good news. My LES not working properly is causing me to have gastroesophageal reflux (GERD).  I wish I didn’t have to deal with yet another problem on top of everything else going on. There’s no easy fix for this, but he is having me try 2 weeks of a proton pump inhibitor med.  Would appreciate your prayers that this med can at least reduce the frequency of these new symptoms—haven’t been sleeping well at all because it happens often at night.

Orthopedic Surgery–

I had an 8-month post-op appointment with my hip surgeon recently.  I continue to need physical therapy twice a week.  I make good progress, but every time I get admitted to the hospital, that progress gets set back. It’s sad for both me and my physical therapists because it takes a lot of hard work to strengthen my muscles, and with every hospital stay, I become weak and don’t bounce back fast.

Nephrology–

Recently, my blood Magnesium level dropped, so my nephrologist had to increase my IV Mg yet AGAIN. I now receive 8 GRAMS of IV Mg every single day which is a crazy huge amount!!  My GI dr. keeps saying I’m the black hole of Mg.

Physical Medicine–

My PCP referred me to my physical medicine dr. to get his input regarding my achy back that I continue to have.  Because of my osteopenia, he wanted to make sure that my achy back is not from any spinal compression fractures.  Thankfully, the x-ray was normal.  So the pain is most likely due to my muscle weakness…..I will be seen in his brace clinic to get fitted for a flexible thoracic back brace.  Unfortunately, he is completely booked out, so I can’t get fitted for one until the middle of July! I am on his waiting list, though, in case anyone cancels..

ENT–

My ENT dr. has been a Top Doctor in the Portland Monthly magazine many times, and I’m not surprised at all!  He is so knowledgeable and caring. He doesn’t think post-nasal drip is what’s causing my chronic cough.  Instead, he thinks I have a type of asthma (there are many types!), so he’s starting me on a steroid inhaler which is to be used with a “spacer.”  He did say it will take a while to start working.  I’m to see him again in 3 months..

________________

As you can see, so much keeps happening.  It’s a lot for me to process, but I am trying to continue rejoicing in suffering.  It’s definitely not easy, and I wonder if/when something big will ever happen that’s not BAD news.  But, as I keep plugging away, I will rejoice in my sufferings, “knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Romans 5:3-5).

Continuing to put my hope in Christ!

P.S. Aren’t these flowers so beautiful? Very kind church friends gave them to me 2 1/2 weeks ago, and I’m still enjoying them even today!

New Struggles

By Kerissa Lee • April 30, 2025
"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." -John 16:33- 

More difficult news..

By Kerissa Lee • April 9, 2025
Dear friends, I’d really appreciate your continued prayers. 🥺 Thank you for being on this journey with me through the good and bad. ❤️ Last year, I had a sleep study where I shared that I was diagnosed with moderate Central Sleep-Disordered Breathing (central apnea happens when the brain doesn’t tell your body to initiate breaths). It was noted that I stopped breathing about 17 times per hour. Well, my neurologist wanted me to get yet another sleep study last month to make sure this neck weakness hasn’t caused worsening apnea. And I’m sad to share that the results were much worse than last year’s. :( I thought last year was bad, but this latest study shows that I stopped breathing more than 40 times per hour (almost 400 times total through the whole night). 🥺 This was hard to hear and also such a reminder that God is the one who gives us “the breath of life” (Genesis 2:7) every minute. It’s by his mercy that we wake up to each new day. ☀️ What makes my case complex is that my esophageal sphincter has been affected by the mitochondrial disorder—it’s weak, so when air from a sleep machine is pushed down into my lungs, bad throat gurgling happens which keeps me up at night because my esophageal sphincter can’t close all the way like it should. :( My appointment with the rheumatologist was yesterday, and I wish I could say she gave a concrete diagnosis of what’s been happening these last several months…but that wasn’t the case. 🥺 I have to get more specific labs done. She also ordered x-rays of my hands and feet to check for possible spots of rheumatoid arthritis or calcinosis. The doctor said sometimes a new condition happens gradually, and it’s a wait-and-see type of situation. 😥 If these additional tests and labs still don’t give a clear cut answer, I’m so glad I have a second opinion with another rheumatologist at the end of June. This one sounds especially good because he’s a DO (doctor of osteopathic medicine) and offers a whole-body approach regarding treatment. Could you please pray something can be done soon as my quality of life continues to be rough, and these latest symptoms have been going on for half a year now. :’( Hard to believe October was 6 months ago! All this time, I’ve just been waiting.. I did ask my PCP at one of my appointments if he ever orders treatment for something even without a definite diagnosis, and he said “yes” which was encouraging to hear. His family leave is almost over, so I see him again soon. Just finished a virtual follow-up with another one of my amazing doctors this afternoon. 💜 She knows a very specialized neurologist in Washington who has his own private practice. She wants me to see him and hopes he’ll be able to connect all the dots and see the bigger picture. So blessed by all of my many doctors who try their best to help me! 🥲 I started the process in applying to the Undiagnosed Diseases program through Harvard (it got pretty delayed because of my 2 mitochondrial crashes in November and December). My application has been assigned to the Seattle clinical site. Please pray that the doctors who review my case will be able to accept me as a patient and find the genetic defect causing my mitochondrial depletion. The UDN acceptance rate is about 40%.. I saw this quote recently by Martin Luther and just had to hand letter it (so thankful for one of my neurologists who increased the anti-seizure medication which has been helping to decrease my hand tremors). ❤️ This statement by Martin Luther is such a beautiful reminder. All that’s happened lately has been the hardest trial, but I’m praying that I will persevere and bear this cross daily to bring honor to the Lord. I know my life is in his loving hands. I’m thankful for God’s promises in Romans 8:28–“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” ✨

February update ❤️

By Kerissa Lee • February 27, 2025
Hi, friends, I went to see my neuromuscular neurologist in Seattle last month, and since there are no neuromuscular specialists here in Oregon willing to see me, he kindly placed a referral for me to see a neurologist he trained who practices in Vancouver, WA! That appointment was originally scheduled for late April, but this new doctor moved it way up, and I was able to see him at the end of January! 😊 I’m so grateful for him, and he seems knowledgeable about mito. He told us that I “am easily the most complex patient he has ever seen.” 😥 I had to get a very painful test completed called an EMG (electromygraphy). It involves having big needles (larger/thicker than acupuncture needles) placed and pushed repeatedly into my neck and shoulder muscles. 😢 Hurt so bad!! I’ve had this done more than once on both legs, but it was much more painful on the neck! He wanted this test to check for active myositis since my MRI was inconclusive. Well, the results show that this progressive neck weakness is due to mitochondrial disease progression, and not from myositis. Whenever I have a “mito crash,” I’m usually able to slowly bounce back afterwards with time. But since I’m not recovering, he explained there’s degeneration going on and that my mitochondria are dying. That was hard to hear. 😢 We may have an idea why my condition is worsening quickly.. I received results from an extensive autoimmune panel which shows that 2 labs came back abnormal for a potential lupus diagnosis. We’re not positive I have it as I need more tests done, but my neurologist said that could definitely be what’s causing this mito progression. I have to see rheumatology now, but unfortunately, OHSU denied to see me. In my previous post, I mentioned that my pain doctor referred me to palliative care. Well, they, too, turned me down…. It’s just hard to fathom that multiple specialties at THE top hospital in Oregon won’t see me because I’m too complex…it’s so isolating and lonely. 🥺 Since my PCP has a new baby girl and is out on leave for 2 months again, I’m so grateful for my GI specialist’s help—it was kind of him to place a referral for me to see a rheumatologist at Providence. That appointment is in April. Please pray my whole medical team will be able to find out the cause of why I have harmful antibodies in my blood. It has now been 4 1/2 months since this all started. Time seems to crawl, yet at the same time, pass by quickly. My mitochondrial symptoms continue to worsen. For example, if I have a virtual visit with one of my doctors, just lying in my recliner and talking to them for 20 minutes causes horrible nystagmus afterwords. 😭 If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. 😔 Could you also pray that the mitochondrial disease progression will slow down? I wanted to share an answer to prayer—you may recall I posted last month that my Seattle neurologist sent a new referral for me to see my mitochondrial specialist in San Diego as it’s been 4 years since I last saw him. Well, even though he’s semi-retired, I’m so happy to say that he accepted me which is a blessing from God! Isn’t that so wonderful? 🥹 He’s booked out ‘til September! But I’m not physically well enough to see him now anyways, so we’re praying my health will show some improvement 7+ months from now and I can travel then.. The Lord recently led me to The Tapestry poem written by Corrie Ten Boom. If you aren’t familiar with her, she was a faithful Christian during World War 2 who survived Auschwitz and the holocaust! You may have read this poem before, but knowing her testimony and how she had to go through extremely hard trials makes The Tapestry even more meaningful/impactful. ❤️ She is an example to me, and I hope this is an encouragement to you as well: “My life is but a weaving Between my God and me. I cannot choose the colors He weaveth steadily. Oft’ times He weaveth sorrow; And I in foolish pride Forget He sees the upper And I the underside. Not ‘til the loom is silent And the shuttles cease to fly Will God unroll the canvas And reveal the reason why. The dark threads are as needful In the weaver’s skillful hand As the threads of gold and silver In the pattern He has planned. He knows, He loves, He cares; Nothing this truth can dim. He gives the very best to those Who leave the choice to Him.” -Corrie Ten Boom